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Health : Medical Research (Grantmaking)

Cystinosis Research Foundation

CRF is the largest provider of grants for cystinosis research in the world, funding over 151 studies in 12 countries.

three stars

87.81

18802 Bardeen Avenue Irvine, CA 92612
tel: (949) 223-7610   Web Site
EIN: 32-0067668

Board Leadership
Nancy J. Stack
Chair

CEO
Nancy J. Stack
President

  Score
(out of 100)
Rating
Overall Score & Rating 87.81 three stars
  Financial 82.77 three stars
  Accountability & Transparency 100.00 four stars
This rating was published 05/01/2017 and includes data from FY2015, the most recent 990 received at that time.

The mission of the Cystinosis Research Foundation is to support bench, clinical and translational research for better treatments and a cure for cystinosis. Through our aggressively funded research agenda, the Cystinosis Research Foundation issues grants for bench and clinical research studies bi-annually in order to accelerate research progress and ensure that cystinosis research is on-going and focused on novel treatments and a cure. The Cystinosis Research Foundation is dedicated to educating the public and the medical community about cystinosis to ensure early diagnosis and proper treatment.

The mission of the Cystinosis Research Foundation is to support bench, clinical and translational research for better treatments and a cure for cystinosis. Through our aggressively funded research agenda, the Cystinosis Research Foundation issues grants for bench and clinical research studies bi-annually in order to accelerate research progress and ensure that cystinosis research is on-going and focused on novel treatments and a cure. The Cystinosis Research Foundation is dedicated to educating the public and the medical community about cystinosis to ensure early diagnosis and proper treatment.

Financial

three stars

82.77

Accountability & Transparency

four stars

100.00

This rating was published 05/01/2017 and includes data from FY2015, the most recent 990 received at that time.
Overall Rating Chart
  Program Expenses
(Percent of the charity's total expenses spent on the programs
and services it delivers)
77.2%
  Administrative Expenses 4.8%
  Fundraising Expenses 17.8%
  Fundraising Efficiency $0.15
  Working Capital Ratio (years) 0.92
  Program Expenses Growth 11.1%
  Liabilities to Assets 45.9%
All data for Financial Performance Metrics calculations was provided by Cystinosis Research Foundation on recent 990s filed with the IRS.
All data for Financial Performance Metrics calculations was provided by Cystinosis Research Foundation on recent 990s filed with the IRS.

Highly Rated

Charity Name & State Overall Score Overall Rating
Cystinosis Research Foundation (CA) 87.81 three stars
The Focused Ultrasound Foundation (VA) 96.16 four stars
Pediatric Brain Tumor Foundation (NC) 85.09 three stars
Roswell Park Alliance Foundation (NY) 94.06 four stars
Sabin Vaccine Institute (DC) 92.38 four stars

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REVENUE  
Contributions  
   Contributions, Gifts & Grants $1,476,451
   Federated Campaigns $0
   Membership Dues $0
   Fundraising Events $1,736,676
   Related Organizations $0
   Government Grants $0
Total Contributions $3,213,127
   Program Service Revenue $0
Total Primary Revenue $3,213,127
   Other Revenue $69,576
TOTAL REVENUE $3,282,703
   
EXPENSES  
   Program Expenses $2,221,488
   Administrative Expenses $111,359
   Fundraising Expenses $465,515
TOTAL FUNCTIONAL EXPENSES $2,798,362
   
Payments to Affiliates $0
Excess (or Deficit) for the year $484,341
   
Net Assets $2,583,973

Program names and associated costs are listed for the top programs as reported on the charity's most recently filed Form 990. The top programs displayed will include the largest three programs, or those programs covering at least 60% of the charity's total expenses, whichever comes first.

Program Name Amount Spent % of Program Expenses
Research Grants $1,895,803 85.3%
Day of Hope Conference $208,082 9.4%
Comeal Cystinosis Research $117,603 5.3%

Ratings History

Form 990 FYE Date Published Overall Score Overall Rating
CN 2.1
2015-12 05/01/2017 87.81 three stars
2014-12 06/01/2016 86.12 three stars
 
CN 2.0
2014-12 02/01/2016 91.46 four stars
2013-12 09/01/2015 89.19 three stars
2013-12 08/01/2015 88.98 three stars
2013-12 06/01/2015 85.34 three stars
2012-12 02/01/2014 76.38 two stars
2011-12 05/01/2013 72.24 two stars

The data displayed on this tab is provided by the IRS in the form of Publication 78 and the Business Master File (BMF).

EIN 32-0067668
Name in IRS Master File CYSTINOSIS RESEARCH FOUNDATION
NTEE Code H80
NTEE Classification Specifically Named Diseases Research
NTEE Type Medical Research
Classification Charitable Organization
Subsection 501(c)(3)  (View the list of codes)
Activities
Foundation Status Organization which receives a substantial part of its support from a governmental unit or the general public   170(b)(1)(A)(vi)
Deductibility Contributions are deductible
Affiliation Independent - the organization is an independent organization or an independent auxiliary (i.e., not affiliated with a National, Regional, or Geographic grouping of organizations).
Group Name [Not Applicable]
Ruling Date July, 2003
Filing Requirement 990 (all other) or 990EZ return
Fiscal Year End December
IRS Forms 990
(provided courtesy of Foundation Center)
(Log In or Register Now to View Forms 990!)
  • December, 2015
  • December, 2014
  • December, 2013
  • December, 2012
  • December, 2011

The data displayed in this profile is provided by the IRS for free in the form of Publication 78 and the Business Master File (BMF).

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Compensation % of Expenses Paid to Title
Not compensated -- Nancy Stack Chair

Highly Rated

Charity Name & State Overall Score Overall Rating
Cystinosis Research Foundation (CA) 87.81 three stars
LUNGevity Foundation (IL) 90.94 four stars
Hearing Health Foundation (NY) 90.82 four stars
Roswell Park Alliance Foundation (NY) 94.06 four stars
CDC Foundation (GA) 96.66 four stars

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This charity has an official representative registered with Charity Navigator.

Charity Contact Info

Cystinosis Research Foundation
18802 Bardeen Avenue
Irvine, CA 92612
tel: (949) 223-7610
fax: (949) 756-5955
EIN: 32-0067668

Visit Web Site

Board Leadership

Nancy J. Stack
Chair

CEO

Nancy J. Stack
President

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